Help! It is thought I have pots or at autonomic dysfunction/failure but no one can tell me for sure!

[Kenjie]

2015 overcame Chronic fatigue. I've had my abundance of health issues and gotten through some hard ailments but this one tops the cake..

Since December 2016... I got infections in December but after they cleared I still hasn't 'come right'... I started to experience lightheadedness.. Hot flushes.. Dizziness.. Lifting anything would bring on a spell... It didn't come on suddenly.. It came on gradually and got worse over time...Ive experienced loss of appetite... Feeling if being I'll and my heart rate goes up and down... Low blood pressure... Feeling off balance when walking...or like being on a boat and having to walk slow to steady myself..pace myself.. I've had near fainting spells several times over last 5 months but haven't fainted yet.. I'd get hot then it would get worse from.there.. I find it hard to cool off when get hot...

I've changed doctor couple times cos none have given me answers.. Current doctor has put me on metroprolol beta blocker without knowing the cause of my symptoms.. He believes I'll get better over time on beta blockers and that I won't be on them for life.. My concern is these tablets are a bandaid effect...

I've been to an ent.. Had a ct scan on forehead ... And I've seen a neurologist who only said he thought pots but he did not confirm anything . now I'm on waiting list to see a specialist at hospital but that won't happen for 3-4 months...

I'm at my wits end after 5 months of feeling so unwell.. Sometimes I get upset and cry out of sheer frustration.. I feel like I've been chasing doctors for answers.. Paid ALOT of money in hopes of getting to the bottom of it and still to no avail..

I'm constantly on Google researching remedies .. Vitamins.. Symptoms.. Possibilities of diagnosis.. As well as specialists I could see that might help..

I do have hypothyroidism but levels always come back normal as I'm on tablets for that for life. I've heard that pots can tie in with hypothyroid... Although sometimes I wish it was as simple as just having a really bad sinusitis so I can treat the cause and it will all go away... And even though I have debris (mucus) appear on my ct scan no one has been concerned...

I do experience ongoing pressure in forehead as well as headaches and pressure on and behind the eyes.. I've had an eye check up and they told me I have enlarged blood vessels in my eyes ..again no one is concerned about this either..

I also get sweaty hands sometimes when hot .. My feet have been sweaty on one occasion..

Last couple weeks I've been taking vitamin b12 and bit D.. Which seem to curb the low blood pressure or on a boat feeling but again I'm concerned it will just mask the symptoms rather than get to root cause...

I'm determined to overcome whatever this is somehow.. Any help or advice or useful information would be most appreciated please.. Also can you please tell me who is the pots specialist in nz? Or a cardiologist in nz who knows a lot about pots and autonomic dysfunction?

 

[AndyPR]

I can't offer any more than internet links, which you've probably found already, but in case you haven't;
Diagnosis - http://www.potsuk.org/diagnosis
NZ doctors - http://www.dysautonomiainternational.org/page.php?ID=14 (scroll down to find NZ)

 

[TrixieStix]

@Kenjie have you seen an actual ENT (ear nose and throat) doctor?

 

[Seven7]

Do the poor's men tilt table test, over and over and get some historicals, if you are positive you can take prove to your doctor.. They say the first thing for OI is the pupil reaction, so when your doctor does the pupil (light test) sometimes they are a little off but doctor will ignore it because is not totally off. So always ask if it is totally ok or a bit off.

 

[Kenjie]

@Kenjie have you seen an actual ENT (ear nose and throat) doctor?

Yes saw ent for pressure in head and behind eyes but he just looked at me and assumed I have atypical migraine. I'd gone to him thinking I had sinusitis but he didn't even use the camera up my nose to look properly.

I'm seeing another ent in June for the camera up my nose because I wish to be thorough. I have had chronic sinus issues before. I've heard if you find the cause you can treat the cause and the pots can potentially diminish.

 

[TrixieStix]

Yes saw ent for pressure in head and behind eyes but he just looked at me and assumed I have atypical migraine. I'd gone to him thinking I had sinusitis but he didn't even use the camera up my nose to look properly.

I'm seeing another ent in June for the camera up my nose because I wish to be thorough. I have had chronic sinus issues before. I've heard if you find the cause you can treat the cause and the pots can potentially diminish.

Seeing another ENT sounds like a good plan. I just saw an ENT for the first time last week and he is having me do blood testing for common allergens (mold, dust, cat, dog, pollen, etc) and told me to start taking Allegra and nasal spray Flonase. I'm hoping that the problem I'm having with extremely dry mouth at night is a result of my chronic sinusitis causing me to having to breathe thru my mouth. He also told me to get a humidifier.

As for "sinus headaches" it seems from what I'm reading here that most often they turn out to actually be migraines. My migraines often cause terrible pain and pressure/throbbing in my sinuses.

"Forty-two percent of patients with migraines are incorrectly diagnosed by a doctor with sinus headache.

Sinus headache and migraine are commonly confused because the two share many of the same symptoms – making it hard to distinguish between sinus headache and migraine. In fact, nasal symptoms often occur along with many types of migraines although sinus symptoms are not included in the official information for diagnosing migraines. Actually, sinus headache isn’t an official diagnosis, but something that is often used by the public and doctors alike to describe a pain that starts near the nose and includes nasal symptoms.

The International Headache Society, which does not recognize the term sinus migraine, states that most people who believe they have sinus headaches, actually suffer from migraine without aura with sinus symptoms. Doctors even mistake migraine symptoms for sinus headache. Because only half of people who suffer from migraines have actually been diagnosed by a doctor, migraine sufferers often mistakenly label their migraine attacks as sinus headaches."

https://migraine.com/migraine-types/sinus-migraine/

 

[Kenjie]

Seeing another ENT sounds like a good plan. I just saw an ENT for the first time last week and he is having me do blood testing for common allergens (mold, dust, cat, dog, pollen, etc) and told me to start taking Allegra and nasal spray Flonase. I'm hoping that the problem I'm having with extremely dry mouth at night is a result of my chronic sinusitis causing me to having to breathe thru my mouth. He also told me to get a humidifier.

As for "sinus headaches" it seems from what I'm reading here that most often they turn out to actually be migraines. My migraines often cause terrible pain and pressure/throbbing in my sinuses.

"Forty-two percent of patients with migraines are incorrectly diagnosed by a doctor with sinus headache.

Sinus headache and migraine are commonly confused because the two share many of the same symptoms – making it hard to distinguish between sinus headache and migraine. In fact, nasal symptoms often occur along with many types of migraines although sinus symptoms are not included in the official information for diagnosing migraines. Actually, sinus headache isn’t an official diagnosis, but something that is often used by the public and doctors alike to describe a pain that starts near the nose and includes nasal symptoms.

The International Headache Society, which does not recognize the term sinus migraine, states that most people who believe they have sinus headaches, actually suffer from migraine without aura with sinus symptoms. Doctors even mistake migraine symptoms for sinus headache. Because only half of people who suffer from migraines have actually been diagnosed by a doctor, migraine sufferers often mistakenly label their migraine attacks as sinus headaches."

https://migraine.com/migraine-types/sinus-migraine/

When I had ct scan it showed debris(mucus) in my sinuses which is why I'd like to have it checked out again via camera .
Never hurts to be thorough. I'm the one happy to pay the bill for answers. Doctors tend to send you home with uncertainty as though you are chasing your own tail.